No matter where you live in the world, you will find that people with dementia are generally taken care of informally by family members and in some cases friends and women. Soon, though, changing population demographics will reduce the number of available caregivers just as the number of people suffering from dementia is expected to increase. In short, our own country and many others around the world face this “impending threat,” according to the World Health Organization.
Specifically, the Centers for Disease Control and Prevention estimates that 2.4 million to 5.1 million people may currently have Alzheimer’s disease in the U.S., and, as our population ages, many more should soon follow. In fact, the calculations appear grim to public health officials. The Census Bureau estimates that the 65-and-older population may double in the next 20 years. In short, those most at risk for Alzheimer’s disease will number about 72 million within two decades.
Who would dispute the need to find ways to prevent, treat, or simply delay this disease? Not only does Alzheimer’s disease, the most common form of dementia, slowly erode memory and cognitive skills, it also eventually destroys a sufferer’s ability to perform even the most simple activities of daily living, such as eating. Clearly, those with this irreversible, progressive brain disease suffer greatly.
Yet, untold pressures and strain are also exerted on caregivers.
Caregiver Health Concerns
Arguably, it may be worse to be a caregiver when stressors begin to take their toll financially, physically, and most of all emotionally. The Alzheimer’s Association estimates that there are 15.4 million Americans 18 and over who provide unpaid care for a person with dementia. They provide 21.9 hours of care per week, which averages out to 3.1 hours per day. How does that fit into the calculations of the American Time Use Survey, which finds that an employed person with children who is between 25 and 54 spends, on an average day, 8.8 hours working and 7.6 hours sleeping?
Well, the Alzheimer’s Association calculates that a significant 13 percent of those providing care necessarily shifted from working full- to part-time hours, while another 11 percent took a less demanding job and another 11 percent gave up work entirely. One-third of all caregivers, then, scaled back economically in order to address this issue in their lives. The World Alzheimer Report 2013 notes that cutting back or giving up work was associated with higher levels of strain among caregivers, while a reduction of stress was reported by those who hired a paid employee to provide care or found additional informal support. In either case, the economic burden of a family member with Alzheimer's disease in some cases means that a caregiver is placing her own future and health in jeopardy.
As might be expected, psychological effects of assuming the rold of caregiver are more profound… and more studied. World Alzheimer Report 2013 researchers who reviewed 10 studies, all of which employed structured interviews, estimated the prevalence of major depressive disorder among caregivers as somewhere between 15 percent and 32 percent, which is three times higher than among non-caregiver participants in these studies.
Although awareness is strong, one of the many unspoken issues surrounding Alzheimer’s disease is that many people do not recognize the earliest signs and symptoms. For family members and sufferers alike, the early stages of the disease blur into routine aging. In April of 2011, the National Institutes of Health supported a revision of clinical diagnostic criteria for Alzheimer’s disease dementia, for the first time in 27 years. Although the new guidelines more clearly outline the stages of the disease for clinicians and researchers, they may not have filtered down to potential sufferers and their families.
What are the early signs?
As presented in Dementia A Public Health Priority, the early stage may be seen as “old age” not just by family and friends but often by professionals as well. The onset of Alzheimer’s disease is gradual, and this adds to the difficulty of diagnosis. The earliest signs include:
- becoming forgetful, especially regarding things that just happened
- difficulty communicating, such as in finding words
- becoming lost in familiar places
- losing track of the time, including time of day, month, year, and season
- having difficulty making decisions and handling personal finances
- having difficulty carrying out complex household tasks
- changing moods and behaviors, including depression or anxiety; a person may react unusually angrily or aggressively on occasion
- becoming less active and motivated
- losing interest in activities and hobbies
At the same time, such early signs may appear invisible to many. Alzheimer’s disease ranks among the most feared of all health concerns. Harvard School of Public Health and Alzheimer Europe conducted a study in five countries (France, Germany, Poland, Spain, and the U.S.) and found that dementia is the biggest health fear after cancer in four of those five countries. This is supported by the results of further research (the Important Perspectives on Alzheimer’s Care and Treatment study), which found Alzheimer’s disease as second out of 10 diseases that people would be most fearful of developing in the future.
To conclude, a key point frequently stressed in new research is this primary fact: dementia is not a normal part of aging. Although opinions differ, it is generally acknowledged that somewhere between two and 10 percent of all cases of dementia start before the age of 65. For every five-year interval after that age, the number of people with Alzheimer’s disease doubles. Whether a family member or friend becomes a sufferer or caregiver, the impact of this disease is greatly felt by all.
Advance awareness may not be able to prevent or delay onset, but full knowledge of the disease and available resources combined with advanced preparation might substantially ease the burden upon caregivers. For more information, please go here.
Sources: Prince M, Prina M, Guerchet M. World Alzheimer Report 2013. Alzheimer's Disease International. 2013.
Dementia a public health priority. World Health Organization. 2012. END